One Step Forward, Two Painful Steps Back

I guess the honeymoon period is over. I was so reluctant to write this, but it's looking truer and truer by the day, and that is that the Humira is already failing me. It's getting worse daily and I'm about as bad as I was before I started the Humira. My knuckles are swollen like plumped up marbles. My wrists are unbendable. My shoulders are stiff, my knees creaky and stubborn, protesting every time I stand from a sitting position. My ankles are unstable, my toes like every one has been stubbed against a chair. I've had to use my handicap permit a couple times the past few days. I came dangerously close to dropping Thor today and burst into tears when I couldn't remove his carseat yesterday to transfer it to a friend's car. My friend, who is 6 months pregnant, and had to push Thor's stroller and help me juggle him because his tiny little self is too heavy for me to hold.

Lulu watched me fall a couple days ago, landing on my left wrist and shrieking with pain. I fall easily because of the instability in my ankles and knees. She was scared and her eyes broadened with worry. I pulled together quickly, and she asked me if it hurt. I told her yes, I had a booboo. "Where?" she asked. On my wrist, I explained, and then pointed to my knuckles and asked if she could see how big they were. She nodded, caressing them curiously and tenderly with her little fingers. "Can I kiss them to make them better?" she asked. My eyes stung with tears, not out of sadness, but shock and awe at this little person. Choked up, all I could do was nod. She gently took my hand, and with the sweetness that a prince kisses the hand of the princess, she grazed her lips over the largest knuckle on my right hand. the middle one, the one that has a right-hand diamond ring that hasn't been able to come off for months, trapped underneath a huge swell.

"Is that better?" she asked, cocking her head, still holding my hand.
"Yes, sweetie, it's much better now." I hugged her and held her tightly, not wanting her to see me cry and misinterpret my tears for anything but sheer, all-encompassing love for her.

Normally, the kids have no idea anything is wrong with me. Unless they play too rough with me (in which case Z and I will tell them to be gentle with me) or if they witness a fall of sorts, like Lulu did, they probably just sort of assume I'm a wimp. Which is fine with me. I don't complain around them, but try to remain matter-of-fact: this is why Mommy can't run with you, this is why you shouldn't grab Mommy's hand too hard. I don't want them to worry. I want them to be kids and not ever have to worry about their mom. But Lulu is just so darn perceptive and there was no hiding that fall from her. I feel guilty for letting her see me shriek like that, but in the end, I had the chance to discover all the more what a beautiful little person she is becoming.

I even feel a little guilty complaining here. So many people, even people I know, have it so much worse than me. Cancer (and not the type of easy-to-remove cancer I had), lupus (a disease for which I'm susceptible and for which I've been tested for multiple times and, thankfully, have been negative), multiple sclerosis, muscular dystrophy, and a laundry list of other afflictions, all affect people I know and love. Hell, I have it easy! I know that. I remind myself of that daily, believe me. I'm so damn lucky. Yet, that whiny, entitled part of myself comes battling through on my bad days and puts me in moods like I am today. So, I am so sorry, my readers, that I complain like I do. Sometimes it's easier to do it here, where a reader can choose to skip an entry, than to my friends or family who are dealing with their own crap and may not feel like they have a choice to ignore me if I choose to complain to them. Does that make sense?

I have a doctor's appointment with my rheumatologist on Monday and I'm positive they will increase the frequency of Humira and possibly start a disease modifying agent, probably Imuran or possibly methotrexate, both chemo drugs which have the potential of increasing the efficacy of biologics like Humira. So, I have not seen the end of the road yet. I still have options, thank goodness, before going back to prednisone. It's looking mighty tempting, sitting there in my medicine cabinet, promising me almost immediate relief if I just take a few pills. I went as far as getting the bottle out and trying to open it, only to find that I physically was not strong enough to open it. In my own twisted mind, this was a sign I shouldn't take it. I put the bottle back and took a pain reliever instead.

In happier news, I managed to behave myself at dinner the other night, treating myself to just a couple slices of pizza, sharing the rest with Thor and Lulu. The sodium made my scale laugh in my face the past couple days, but I know it is only temporarily and the water weight will probably shed in a such a manner to make me feel particularly successful and virtuous. Last night was Mondo Salad night, which Lulu decided to copy, neglecting her whole grain penne and marinara sauce for her Mini Mondo Salad. 'Atta girl! Thor "asked" (via pointing and screaming) for some salad, only to pop a piece of lettuce in his mouth, wretch, and hand it back to me. One out of two ain't bad.

Tonight is a potluck at Lulu's school and I'm hoping someone brings along a healthy option such as salad or baked chicken or something. Yes, I should have opted to bring a healthy option myself (not a noodle, red sauce, sausage and cheese casserole), but I choked! I couldn't think! I was under the gun to write down what I'd bring, to make a commitment in just a few seconds, and it's all I could think of. Anyway, if nothing looks appealing/healthy, I'll eat at home. No big deal.


Today marks four weeks since The Great Weight Reversal kicked off and I am 14 pounds down. I suspect I am still hanging onto water weight and I'll see a considerable drop in the next couple days as I eat more wholesomely. Hopefully, in a few days, I'll be able to report more of a 15-16 pound drop. That would put me almost a third of the way to my goal! This is not to say that I expect to reach my goal in only three months, but it sure is motivating to have a start such as this. As we all know, though, it isn't the losing weight that is the problem. It's the maintaining. Once I reach The Goal, I plan on continuing writing here (perhaps under a new blog name? We'll see) as I try to stay healthy. It's not just a three month challenge. It's a lifetime challenge.